Saturday, May 28, 2011

Noel’s Home


Just a quick update to let you know that Noel's home! She still not back to 100% but she's on her way to being back to herself. The update on our trip to Ohio is that we're still waiting; waiting for the two Hospital's (Children's here in Denver and Nationwide in Ohio) to exchange information and to then fit Noel into their overbooked schedule. I still have no idea as to a time line; I guess it could be anytime between now and August. We are trying to patiently wait on the Lord and what His plan for our summer will be. Other than Noel's recent "cold" she has been doing great on TPN; she gained 3lbs in two months after not gaining any weight in almost two years! It so bittersweet, it's great to see her thriving and doing great on TPN; But I also know that she CAN'T live on TPN the rest of her life. -TPN increases the risk of having liver disease and damage. Infants and young children on TPN are more at risk for liver disease than older children and adults. The organs of infants and younger children are still developing. They are not as capable of handling the burden and strain that TPN puts on them. Children who are on TPN for a long time are also more at risk than those who are on TPN temporarily or for a short time. Some children who require an intestinal transplant may also receive a liver transplant at the same time due to liver disease associated with their use of TPN. Noel gets blood test once a week to monitor how her livers is doing and it's starting to show some elevated numbers which means that the TPN is starting to affect her liver. So while I see her feeling and looking good, I know the same medicine that's helping her thrive right now is also damaging a vital organ in her body. That's why we need so many prayers and so much support right now; it's not if Noel's in the hospital than she sick and when she's not in the hospital she's healthy; Unfortunately she is a very sick little girl who needs something big to change in her body so she can live life to the fullest. I know God can do it and that's where I'm putting my Faith.


Tina

Monday, May 23, 2011

Hospital Update

Noel's in the Hospital; sadly we knew this was coming. Since Noel isn't eating through her stomach and she's getting all of her nutrition through an I.V. (Central Line) in her arm ANYTIME she has a fever…she has to be admitted to the hospital for a minimum of two days. The reason for this is that she could have a blood infection, the central line in her arm is a hot spot for bacteria to grow and if the bacteria gets into her blood stream she could get really sick really fast. This is one of the MAJOR down falls of her living on TPN (I.V. nutrition) and having a central line; 2 years ago when she had a central line we were in and out of the hospital more times than I can count. This is also why we need to get to Ohio sooner than later, so please pray we get there soon. So right now it just looks like Noel has a cold, she's growing a bacteria in her trach called pseudomonas which gives her cold like symptoms: fever, running nose, cough. So far she has been fever free today which is good news! If she remains fever free we could be heading home on Wednesday. Thank you so much to everyone who is helping out with our other two kiddos and thanks to everyone who is praying for us; you all bless us more than you could know.

Tina

Tuesday, May 17, 2011

WELCOME TO HOLLAND




by
Emily Perl Kingsley.




I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......




When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.




After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."




"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."




But there's been a change in the flight plan. They've landed in Holland and there you must stay.




The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.




So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.




It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.




But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."




And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.




But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.












I saw this Uhaul today; it reminded me that yes we're in Holland and that yes Holland is the city of Tulips!

Monday, May 2, 2011

Get Your Head in the Game

I know why God brought sports into my life; He was preparing me. All through High School I played sports, I love playing sports. My favorite part of playing is being a part of a team. I love the amazing unity that takes place on a basketball court when you're down by 4 in the fourth quarter, when everyone digs down a little further and gives a little more in order to win the game together. When you're in the fourth quarter it's hard to remember what the first three quarters were like; all you can see is the end. However, your head can easily be taken out of the game when the opposing Coach calls a last minute time out. Everything stops, your momentum, your focus and your adrenaline. In the few moments of the timeout you have time to think; you may start to think about how far you have to go to win, you may start to think, "If only I'd played better the first quarter we wouldn't be behind by four." You may even start to feel your body and realize how tired you are. This was the plan of the opposing Coach, to get you out of the game, even if it's only for 30 seconds; if you can lose focus for that short of time the game and the Victory can surly be theirs. I feel as though sometimes I'm in the timeout of the fourth quarter. That I'm not "in the game" in the survival mode of living in the hospital; the adrenaline of living minute to minute not knowing what's going to happen next has worn off. I feel like I've been looking around and thinking how far we have to go, wondering how we can make it to the end of the "game." Thinking how hard it's going to be to get to Ohio, how hard it's going to be to find out news of what's wrong with Noel, or the most dreaded news that there's nothing they can do for her. I feel like I've had time to realize how tired I am; I've been playing this game with all I've got for years. I'm worn out. I just want to sit on the bench and have someone else go in for me. Today however God reminded me that I'm not a mediocre athlete I'm a great athlete, even if my focus is lost for a moment, a great athlete knows that the game is not over until the timer buzzes. In a game it's the opposing coach who wants to take the victory from you; in life it's the devil. When you're at a time in your life and you feel like giving up satan's the one who wants you to lose; he wants you to stop, lose focus and momentum, to believe that you can't go on anymore. But God's the one who wants us to keep our focus, to keep going, to win. This morning I heard it this way. "It's not over until God says it's over." I needed to be reminded of that; that a 30 second time out doesn't have to lose the whole game. A great athlete also realizes they can't win the game without the help and support of their teammates. They need each other to make it through to win the game, no game is every won by a single person on the court it's always because the work of team. I feel renewed, refreshed, energized; ready to get back in the game; Blessed by the amazing teammates God has given me and ready to give my all through this quarter until the game is won!